31 Aug 2007

But to get back to what this blog is really all about, here's a little update on the family.

First, on Monday, we said goodbye to M. the wonderful young woman who has been coming round almost very week for almost a year to play with Duncan and the others. She is starting full-time work as a primary school teacher. She had bought gifts for all 3 children (Underground Ernie engines for the boys- very much appreciated!) and had a lovely card for me, thanking me for inviting her into our home every week.

It had been entirely our pleasure. She is a delightful, kind, fun and intelligent woman. Her class is lucky to have her as their teacher. She was so open to the children, always tried hard to engage Duncan and gained his love in return. She wanted to know a bit about autism to better help any autistic children she may teach. What a special person she is, to have given up her time for free, for that, but mostly to play with a little autistic boy, and to give his mum a bit of time off on a Monday morning.

We will hopefully see her sometimes on the school holidays. I hope so, because we've all made a friend.

And talking of friends, Lady's best friend in the whole wide world came to stay for a few days with her mum and sister. Just like last year when they visited, we all just went right back to familiarity and comfort with each other. This time we went to the Folk and Transport Museums, and S. took the 3 girls on the train to W5. We don't have our 7-seater car anymore so couldn't all fit. They also went to our neighbour's birthday party. Apart from that, we all talked lots and lots, and the children played, dressed-up, created dance sequences to Mika songs...oh my.

I'm so happy that we're still in touch. I'm very fond of them all, and Lady and S. have special bond. When Gordon dropped them at the airport, Lady went too. He told me that she was craning her neck looking out the window as he drove off, and when he asked her to sit back, she had tears running down her face.

I've noticed a blog post that kindly linked to my own post on the recent Daily Mail 'Monster Autism' story. To reciprocate the link love seems the least I can do!

The writer tackles autism cures;

If, hypothetically, a cure for autism existed, would you administer it?If you would, then you are a “curebie” and you should expect a vehement response for your opinion. Neurodiversity, as the argument goes, is no less a valid principle than racial or gender diversity. Advocate a cure and you are no better than a racist, a chauvinist, or any other bigot.

See, the thing is, that's not what I think a curebie is. There IS NO cure for autism. If somehow one was made available, I would not administer it to my son; I would let him decide for himself when he's old enough if he wanted to have a major and drastic change in his neurological make-up.

There's a great post here by Abfh called Defining Curebie-ism. I'd agree with her definition of the word.

The blogger continues;

Except we have to pause for a moment and ask who is proposing this particular opinion, and why?

The answer is simple; it is High Functioning autistics and aspies, advocating it because they want to be accepted for who they are, not rejected as freaks. Damned good point. They have every right to be offended and upset by the treatment they often receive. BUT ARE THEY SPEAKING FOR MY SON?

Read this carefully:

NO THEY BLOODY WELL ARE NOT.

There is a big difference - an enormous, fundamental difference between curing someone whose disability prevents them from understanding and adopting the social niceties of life, and curing someone whose disability leads them to smear shit all over their home, beat the crap out of their siblings, and cause sleep deprivation to the point of clinical insanity to their parents.

Autistic rights and the principle of neurodiversity expires when it imposes unreasonable demands upon other people who did not volunteer, and who have rights of their own that are rejected without any thought whatsoever.

I don't understand that last paragraph. What does he mean by 'autistic rights ... expires'? And why point out that parents didn't 'volunteer'. I don't subscribe to the notion that only those who can manage it are 'given' a disabled child either. It just happened, sheer chance. Just like the fact that 2 of my kids have curly hair, 2 of them are boys, one of them happens to be autistic.

Having an autistic child is tough and causes you to change your expectations of family life. Parents who adapt and accept this, and their children, are more likely to thrive.

then all I think of are the words “glib,” “patronising” and “bastard.”

Gee, it's nice of you to care.

The delightful man finishes with;

Since when did the arrival of a disabled child mean that parents should renounce their own expectations of life accept the priorities of their child? It doesn’t apply to parents of children with any of the other disabilities I teach - so why the fuck should autism be different?

Why? Because the service providers are ignorant, and because there are too many idiots like AFF and other ‘autism liberationist’ groups who think that their needs are best met by stamping underfoot the needs of their carers.

Wake up and smell the coffee, guys - you have a disability. It imposes burdens of care upon others that are only met by emotional bonds and goodwill. Stop taking the piss, otherwise you might find the goodwill has a short shelf life.

I just find this odd. The arrival of any child, disabled or not, means that parents have to adjust the expectations of their own life and for a while at least, the child's needs take priority. It doesn't have to mean you live just for your children, that you are a slave to them. But you have to expect that things will change from the entirely different scenario of a child free existence.

Oh and the blogger known as JB or FS (who called me an ignorant fuck and a despicable hypocrite on my blog) loved it, calling it a 'great post'!

I was surprised that the blog I've mentioned is linked to from the ASD Friendly site, which I used to read and seems to have lots of useful information, and is, as far as I can tell, free from quackery.

27 Aug 2007

We all had a marvelous time on holiday in Donegal. Even the weather was surprisingly fine. Though, last Saturday, when we arrived at the caravan park, it was fairly bleak; wet and windy. We all donned boots and rain coats for our first walk around the site. Duncan got soaked, because as far as he was concerned, when you're wearing wellies, you're supposed to jump into every puddle! He was running along a muddy path, through a patch of puddles, saying 'Big Thunder Mountain!' He was pretending to be the coaster splashing through the water.

By Sunday afternoon it had dried up and from then on it stayed mostly dry with just a few light showers once or twice. Knowing the climate in Donegal, and given what an awful summer we've had so far, that was astounding...and welcome.

The site had a great playground, a couple of bouncy castles, a climbing wall and a bungee-jump-trampoline thing. There were little go-kart bikes and a bike that the whole family could ride, with the adults steering and peddling. I also made use of the laundry; just 'cause we're on holiday doesn't mean everyones bladders last the night.

Duncan loved the go-kart, and took one out for a while every day. Whoever was accompanying him had to run fast to keep up. But what was great about the place, was we didn't need to be right there at his side all the time. We could let him go off 30m or so in front of us, knowing that he was safe enough.

Lady and Thomas were allowed to go to the playground without us. It was such a big deal to them, getting that little bit of freedom. Thomas made friends immediately, he just asked the other children if they wanted to play with him. Lady did as she always has, and waited for the other children to approach her. By the end of the week they both had a little gang of buddies. The site provided a sort of summer club, with organised and supervised activities for the children. Lady and Thomas went to several of these; tennis, rounders, arts and crafts, football, dance-camp etc. Watching Thomas play football was hilarious. He was all effort and no effect. He ran around lots, always making a big dramatic start like Sportacus.

The site was in the Fanad Peninsula, a stunning part of the country and we enjoyed some beautiful views driving around. Duncan was frightened when we were on the mountain roads, especially whenever we stopped the car or when there was a panoramic view over the sea. The steep inclines worried him too. He was saying, 'brakes, brakes Mr Conductor', 'I don't want to die!' and 'hold back, hold back' as well as a few other train related phrases. I held his hand and kept reassuring him that we were fine and safe, that Daddy was driving very carefully and he seemed to be mollified.

We went to the beach a few times. One trip was to Ballymastocker Bay, right at the north of Fanad head. This beach didn't border a mere lough, this looked onto the wide Atlantic Ocean. We'd bought short wetsuits for the children, and they had such a magical time splashing in the sea and digging and rolling down sand dunes and clambering over rocks. It was actually warm and sunny that day (I topped up my farmer's tan). Gordon and I sat on the soft sand, away from the children on the nearly deserted beach, watching them and enjoying a moment of perfect happiness. (Image taken from the Donegal Ancestry Centre website; we forgot the camera that day.)

Of course we all had our moments of sub-optimal temper. But we always got over it. Even on the last night, when there was a little concert organised as an opportunity for the children to show off the songs and dances they'd learned in dance-camp, Duncan was manageable. He stayed outside the barn which was serving as the concert hall and was too noisy and crowded inside for him. He passed the time riding a tricycle up and down a wooden ramp. Gordon and I took it in turn to stay outside or to stand in the doorway, so we could keep an eye on Duncan, while watching the show.

Thomas and lady were taking part in the concert. In their first number, they were doing a wee dance. Thomas performed the whole thing with his back to the audience. It wasn't that he was shy, it just never seemed to occur to him to face us! He did better the next time (after I reminded him that we did want to see him!) and was so funny shaking his little booty. Lady had her big moment in the spotlight, when she and another girl took the mike to sing 'Chim Chiminee' (from Mary Poppins) and she did great!

Anyway, we're home again and glad to be back. When we were leaving, lady and Thomas said they wanted to go back to the same place next year. I asked Duncan if he wanted to go there again too, he said 'Yes I did!'

17 Aug 2007

I know I shouldn't. It's in the Mail..ignore it! They always print junk. (Melanie Phillips, anyone?!) But this article is just too horrible. I left a comment which will probably not be published. I have left critical comments before on Mail articles, (autism and MMR junk usually) and they have never been published. So I wanted to copy the comment here instead.

This is a very disturbing article using horrible language; 'monster', 'the end of safety, normality and reason', 'I have felt, at times, like killing Luke when he has hurt her.' There are no words of love or understanding for her son's needs and differences.

I have an autistic son. I have worked hard to understand his needs, his sensory preferences. Perhaps the boy destroyed the M&S coat as it felt horrible to him? Did this mum try to make things easier for him, for example, offer him a quiet room or headphones when his baby sister's crying was bothering his extra sensitive hearing? He is absolutely aware of she feels about him and it will no doubt have caused him so much stress.

Having an autistic child is tough and causes you to change your expectations of family life. Parents who adapt and accept this, and their children, are more likely to thrive.Good luck to Luke in his new school. Be proud of yourself, and you'll find a community of people like you out there to embrace you.

There I ran out of characters.

But I did so want to say, '*edited bit. Go read a bit about your son's condition, learn from people who's brains are wired like his (NOT 'wired up wrongly in many ways'). Have you ever heard of the concept of diversity?I managed to restrain myself, until now.

(PS, We're all going on holiday for a week from tomorrow. I will pack my children's favourite foods and toys, take familiar comfort objects and it WILL NOT be a nightmare!)

OK, breathe...feeling calm. Bye!

*I have edited this post to remove an personally insulting comment I had written.Sharon

16 Aug 2007

I was talking with Duncan about Lady's birthday. I said, 'Lady is 9 now.'

'NO! Lady not 9, Lady is 5!'

'Oh, and how old is Duncan?'No answer

'Is Duncan 7?'

'No, Duncan is 6.'

'And what about Thomas, what age is he...what number is he?'

Thomas is 1. Daddy is 4 and Mummy is 2.'

Then I got it. Duncan has assigned his own Thomas the Tank Engine names to everyone in the family, and a few friends and extended family members too, and he prefers to use our engine numbers, not our ages. Here's his version;

Lady - James (no. 5)

Duncan - Percy (no. 6)

Thomas - Thomas (no. 1)

me - Edward (no. 2)

Gordon - Gordon (no 4)

Grandma - The Fat Controller (no number!)

Granda - Henry (no. 3)

G. (my step-mum) - Diesel 10

M. (NAS befriender) - Oliver the Great Western Engine (no 11)

C. (my sister) - Mavis

In fact, for any person I mention, he'll think for a while and then assign an engine or character name and he's always consistent in who's called what.

This summer, a fun fair has set up in our local town. One of the rides is a caterpillar roller coaster for children. Duncan remembered it from last year, and is fascinated by it. We have had to go down to the fair many times this year, on little pilgrimages so he can stand in awe watching this marvelous and slightly scary contraption. He asks me to 'go to see caterpillar train...sit on bench. Not ride! Just watch.'

So we go, and he delights in watching the thing, and the others run after pigeons or circle the fountain and we usually all get a ice-cream (a 99) to make it all worth while. Last week, he wanted to go a bit closer, so we went into the fair area and stood right beside the ride. After watching it go a few times, he decided he wanted to try it so on we went. He was a bit frightened and was softly saying 'stop, stop, get off, I don't want to die.' (The line about dieing is a quote from somewhere and he uses it to mean... I'm a bit worried.) I held him and told him it was safe, it's just a ride, we go round 3 times then it stops and we get off. By the end he was sort of getting used to it but we were both relieved when it was over. However as soon as he got off Lady and Thomas ran up to hug him and were all excited that he'd done it. I was telling them 'Duncan was a bit scared, caterpillar trains are a bit fast and scary' He corrected me saying, 'not scary, Duncan is happy.'

I don't think he'll want to go on again in a hurry, but he's pleased to have experienced it for himself just that once.

Right now, the boys are eating cookies that Duncan and I just baked. Lady is at summer scheme for the last time this summer. And I've just answered the door to some annoying man offering to clean the gutters and making fun of the cuts on my face; 'Did you fall over? Was there drink involved?'Oh god how hilarious.

Oh yeah, I fell over, and there wasn't any ice involved this time. Yesterday evening I had to ask our neighbour about something and Lady came out after me leaving the front door open. So Duncan came out too and didn't want to go home. I played a bit, running after him and pretending to 'get' him. Then I managed to lead him indoors, and he asked to ring the door bell. I know he likes to do this sometimes on his way in, so I opened the front door again. But instead of ringing the bell he dashed off towards the gate. I ran after him; he stopped suddenly in front of me, and I just had too much momentum to stop myself in time. I ran into him and tripped up, crashing over him, bashing my face hard on the tarmac, ripping out the knee in my jeans and cutting my knee, and hurting poor little Duncan's side as he was trapped under me.

It all hurt a lot, and Duncan was so annoyed to see me bleeding. He said, 'Mummy no cut. Bleeding tomorrow. New skin will come.' He was kissing and fussing me, even though he'd been hurt himself. Anyway, the children were all so sweet and Lady told me to lie down and they tidied up. Gordon came home and doctored me, buying steri-strips to seal the still bleeding wound.

But flipin' 'eck, I'm not used to this pain. How do kids cope with all the cut knees and whatnot they get?

14 Aug 2007

On Friday, Lady was 9. Yesterday, Gordon's mum was 80. It's been birthday season round here.

Lady wanted to have her party on Saturday and have a family day on Friday. We all went for lunch at Mc's (her choice) then on to one of those indoor play centres. They scampered and climbed and jumped for an hour. Duncan really resisted going in at first, since we'd never been to that particular place before. I asked him if he wanted to just go in to watch Lady and Thomas, which he did. Then he saw a 'Tweenies' ride on toy, which he examined for a while, then a vending machine, reminding him of the vending machine on one of their PC learning games, since he repeated the dialogue about 'entering the exact change'. Soon he was off running, though he stopped every few minutes beside the vending machine, and before we left I gave him some money to buy a bag of sweets. He knew just how to use it too!

That evening, the 'summer ball' (ie dinner and disco) organised by some gregarious folk at Gordon's work was held. We both went, and it's the first time I've met some of his colleagues. It was a good night out too. I think a few people were somewhat surprised to see Gordon dance, having pegged him as some kind of swotty professor type (which he is) but he's also big into his music. It's not as easy to categorise people as it might appear!

We had several friends over for the party on Saturday, and the children all enjoyed themselves, despite the rotten wet weather. (Lady was out dancing barefoot in the rain by the end of the day!) A new friend she met at summer scheme was the only child there not home-educated. Two sets of school going friends couldn't make it. Some of our grown up (well they act that way most of the time) friends were there too so we wiled the afternoon away, eating and chatting. I especially enjoyed playing with little A, just turned 2, and utterly gorgeous.

We took it easy on Sunday, after all those revelries. We went out for a walk on Sunday only to be caught in the rain. No surprises there! In the evening, Lady and I went ice-skating. We last went about 2 years ago and she never made it onto the ice at all. Now however, she was great. I however, fell over 3 times and drove home with a wet backside!

There were more celebrations on Monday. Gordon's mum was 80, though she really doesn't look it. We went into Belfast for dinner at the Merchant House hotel. The restaurant there is bonkers! It looks like a bit of Versailles in the middle of Belfast; gilt and cherubs and a huge chandelier. It was fabulous. E. loved it. Moreover, the meal was wonderful, so it was a lovely, special night. I'd made a little cake which the children helped me to decorate, so we did the cake ceremony in her house before going home. M, our NAS befriender, babysat.

Also celebrating her birthday yesterday, was my step-sister G. She lives in England, and is due to have her much longed for baby any day now. My dad and her mum are over for a few weeks for the big event. So birthday waves across the Irish Sea to G. too!

A few weeks back, the NAS were promoting a small survey they'd commissioned about Thomas the Tank Engine and autism. It was mentioned in the Guardian, and on the NAS site. A PDF of the report is available here.

Not surprisingly, given the names on our blog and what any regular reader knows about my son, when I saw the questionnaire on the NAS site and in their newsletter, I decided to respond. I'd imagine many others also took part because their autistic children are so into Thomas, so it's not exactly unbiased!

Anyway, it's interesting to read and here are a few quotes from the PDF report.

The researchA survey with parents of children with autism under the age of 10 was launched on the NAS’s website in April 2007 with nearly 750 people taking part. Ten telephone and face-to-face interviews were also conducted with parents of children with autism aged between four and nine years old. Four parents in England, two in Wales, two in Scotland and two in Northern Ireland took part.

Summary of research findingsSome of the main findings are:• In a comparison with other popular children’s characters, Thomas & Friends was the most popular, with nearly 90% of children liking it ‘very much’.• Many parents felt that Thomas & Friends played a significant part in their child’s early learning and development – in particular numbers, colours and language.• Some children in the study have been able to learn basic facial expressions and emotions from Thomas & Friends.• Parents have been able to use Thomas & Friends’ ‘language’ to communicate with their child where ordinary language has failed.• Almost 39% of parents reported that their child’s interest in Thomas & Friends lasted over two years longer than siblings’ interest in the character.• Highly important aspects of the relationship for parents were the feeling of safety and security Thomas & Friends provides for children and its calming effect.

Some, well seemingly many, autistic children just really like the Thomas stuff and learn from it. This is intrinsic learning in action. It demonstrates that you don't need to have a marketed therapy to get through to your child, you just need to see what interests them and go from there together. Now if anyone tries to market 'Thomas Therapy TM' I'll scream!

Some of the quotes in the report include;

“Thomas & Friends has definitely been one of the elements that has helped him to recognise human facial expressions and to label his own emotions.”Parent of seven year old with autism.

...

Their intense interest in Thomas & Friends seems to have been of some help in enabling children with autism and their siblings to interact, even if this is only that they watch a Thomas & Friends DVD together.

“R will play alongside his brother and sister with the trains and tracks. His sister will tell a story with the trains and sometimes R will join in but I don’t think he really understands. He prefers to go over the same stories from the DVDs. He does like to crash the trains into each other with his brother though!”Parent of seven year old with autism.

...

Communication connectionInterestingly, some parents have found that they can communicate with their child and manage their behaviour using Thomas & Friends’ language and terminology, where ‘ordinary’ language has failed.“We use lots of Thomas language to communicate with B and get him to do things, such as a ‘washdown’ for a bath, telling him he’s ‘really useful’, ‘chugging up’ to bed, and ‘red light’ or ‘the signal is up’ for no or stop.”Parent of four year old with high-functioning autism

Any of the above sound familiar! :-) I like that last quote too, it's stuff that we do. That 4 year old's parent and me would just 'get' each others ways of interacting with our children.

8 Aug 2007

A few weeks back, Gordon and I went to London for 2 nights while my dad and step-mum minded the children. Gordon was to be awarded Fellowship of the Royal College of Physicians; pretty impressive! We arrived on Monday afternoon and stayed in a nice hotel near the Natural History Museum, so obviously we went to see the dinosaurs. In the evening we met up with my sister and had a lovely evening chatting and having cocktails and noodles. The next day we walked around some of our old haunts, then along the river, stepping into the Tate for a while. It'd have been nice to see the Dali exhibition but having Dim Sum in the Harbour City took priority! Then we got dressed up and went to the award ceremony for an afternoon of pomp and splendour at the Royal College. It was a short and surprisingly (to me) interesting event. The president spoke to Gordon straight after, complimenting him on a talk of his he'd heard a few months back. (Look, I boast about the kids often enough, so just allow me this!)

That evening we ate in a super fine Indian restaurant in Knightsbridge called Amaya. We were seated close to the open kitchen, and saw the racks of kebabs and the variety of grills and ovens used. The food was lovely, and included the tastiest potato dish ever. The clientele looked like what used to be known an yuppies. Though to be honest, for a while there, I was one of those NIPPLES myself (New Irish Professional Person Living in England). Walking back to the hotel took us past the convoys of Lamborghinis that some of the ultra rich London dwellers seem to think of as the perfect city vehicle.

On our last morning in London, we dressed up again and went out to enjoy the highlight of our trip; lunch at the Restaurant Gordon Ramsey. This seemed to be a good spot for a celebratory meal. It was the most delicious meal I have ever eaten and we lingered for two hours. Forget FRCP, this was why we'd come to London!

We'd time to kill before heading out to the airport so we went to the Science Museum, still all dolled-up. I discovered I now have a much deeper appreciation for and understanding of, the steam engines on display, thanks to Duncan. We had a quick walk round the 'History of Medicine' display too. There was a bit written about fMRI and autism, including some typical misinformation about how those with the 'disorder' lack empathy, as well as something about developing cures. I should have photographed it. It's something I should investigate further, and perhaps some pressure could be put on them to change the wording.

We got home quite late and learned that the children had all been great. Lady had started summer scheme, Duncan and his Granda had spent a lovely long afternoon on the beach together, and they'd all been treated to trips to the park and ice-creams and the kind of loving attention only grandparents can give.

About this Blog

Curious, enthusiastic and affectionate mother of 3, one of whom is perfectly autistic, I find great joy in each of my children and strive to help them learn and grow in an atmosphere of love and acceptance of their differences, difficulties and strengths.

The children's pseudonyms reflect my autistic son's one time love of all things Thomas the Tank Engine.

This is my personal blog so all posts and opinions shared are my own and not those of my employer.